Chemo Free and Feeling GOOD

Well my lovely bloglets,

I tend to write this when I either feel fucking miserable and need to get things out of the head to stop myself from going mad.  Or something amazing has happened and I want to show off.

Today, it’s neither of those things.  I am writing because I feel happy and like me again!

It’s taken two weeks for me to feel like this again, a little longer than I was hoping, but, it’s here!!

So what does this mean?  Well, I’m not surviving on as little sleep as I thought I would and actually ended up sleeping for 11 hours last night which I wasn’t expecting.  But I had already decided to have a chilled morning, so I woke up when I did naturally, not to an alarm which is always nice.  I think that also since feeling better I have done a lot, so it’s not that surprising on reflection that I needed a long sleep last night.

I thought I would talk you through the days as there are only 3 and a half to talk about to show you how amazing it is to be like this.

Monday – I think I had 9 hours sleep, I went for a run!!!!!!  First time since fuck knows when, and then went to my work space.  I got EVERYTHING done on my to do list – I can’t actually remember the last time I managed to do this and then went to an event.  At the event I was able to stand for TWO AND A HALF HOURS.  I haven’t been able to do this in YEARS! I can normally manage about half an hour before I need to sit.  I was also able to concentrate and DIDN’T WORRY about getting home or sleep or how I would feel the next day or ANTYING.  I was then able to walk to the tube WITHOUT wanting to cry because I was so exhausted or wonder how the fuck I was going to find the energy to get there.  It was fucking IMMENSE.

Tuesday – I woke up after around 9 hours and got ready ON TIME, (I’m even quicker at making breakfast and getting ready) and ran my networking meeting.  I then had two meetings back to back and then a patient.  I also managed to STAND on the tube on the way home and DIDN’T CRY!!!!!!!!  I also managed to do all of this without mainlining caffeine and/or sugar.

Wednesday – I think I slept a little bit more, maybe more like 9 and a half hours or 10 hours and had a meeting and then a patient and then went to my workspace to work.  I then decided to walk home which took 40 minutes and saw a friend for supper.

Today – I ended up sleeping for 11 hours last night – I think I might have done a bit much over the last couple of days….. and I went for a run and then saw a friend and had a meeting and STOOD on the tube and have been doing emails for the last hour and a half AND I HAVE CONCENTRATION AND I DON’T FEEL LIKE I’VE BEEN PUNCHED IN THE FACE BECAUSE I’M SO EXHAUSTED AND I FEEL HAPPY AND I GET SHIT DONE AND I’M NOT WORRYING ABOUT TOMORROW.

I have my life back.

I definitely have 2 more weeks of this and I am going to enjoy and love EVERY SINGLE SECOND.  And not worry about the decision I have to make.  I haven’t felt like this in years.  I don’t know how long I will have this for.  It’s so fragile.  It’s possibly so short lived.  But fuck it feels GOOD.

So I thought I would write so show the impact of being chemo free has on my life.  Or maybe to show the impact that being on chemo has. 

Being able to concentrate all day.  Something so many take for granted.  For me, this is a luxury. 

I feel light.  The bags are fading. I don’t have to choose work or friends.  I don’t have to think, if I do this today, will I be able to function tomorrow.  I don’t have to choose exercise, or get my work done.  I am free.  This is what 32 is meant to feel like.

With love and hope,

XXX

Normal. What is that anyway?

Desperate to be normal. But what is that? I have been different for the last 10 years because of living with a chronic cancer. I want to highlight that I am living with it. It is not me. I am not it. I am not defined by it. But yes of course it does impact on me, shapes me, is partly responsible for who I am today. Diagnosed at 22 - such formative years. Would I be who I am today anyway? I don't know. 

So it's mental health week. People who 'aren't normal'. Walk around with a hidden thing at all times. Smiles mask so many internal thoughts and feelings. 

I would also like to flag at this point that I do not have depression, anxiety, OCD or anything else in the myriad that is 'mental health'. What I do have is huge self-awareness and the need to write, so I write about how I feel and put it on the internet. 

So yes. Maybe I am a bit mental....

And my internal chat isn't always kind. Fat. Ugly. This is why you are single. Cancer and not drinking scares men off. The fact I want babies and talk about it. Fucking hell. DONT DO THAT. Nothing more off putting than someone who is honest… 

And then the flip side. Seen as too self-confident. Too self-assured. Because I am happy with me. Basically. Most of the time. I like me. I love me. Cancer has taught me that. Therapy has shown me that. I don't hate cancer because that would mean hating myself. And frankly. That is something I am not prepared to do or even consider. 

So why am I writing this on the first day of mental health week? Maybe to show that it's not just the obvious things that affect your mental health. Just because I don't take antidepressants or anti-anxiety meds doesn't mean I don't sometimes battle with my mind. I do. 

I am on a chemo break and at the weekend after nearly 2 weeks off treatment I have begun to feel lighter. Less fatigued. More like me. Happy? I think so. It's such a fragile thing happiness. Yesterday I felt happy. Content. I cooked, cleaned, read a crime novel, stayed off screens. And then I saw something and immediately my mind flipped. I was upset. I was sad. I questioned why I am. What is my life? Why did I get this? Why do I live with this invisible thing that's with me and impacts on everything? It wasn't so much of a problem when I was younger, but the impact is becoming more and more. The longer I spend on treatment- daily pill chemotherapy- the more of an impact it makes. The fatigue gets worse. More debilitating. I don't live a normal life. I can't do everything that my friends do. It's shit. And the impact of that on my mental health is fucking massive. 

And people don't get it. I don't look like a 'normal' cancer patient. I get on with it. I refuse to be an ill person. I push myself. I get out of bed every single fucking day. Even when the thought of it makes me want to cry.  

And I say with a smile 'it's ok, it could be worse. It's just a pill. I still have my life'. 

But do I? 

Why can't I do a day's work AND go out and see friends in the evening? Why do I need between 10-12 hours sleep EVERY night just to sort of function the next day? Why do I have to worry about the impact of what I do today on how I will feel tomorrow? Why do I have to say no to going to things that involve standing for more than about half an hour because I have to sit down? Why aren't I married with a baby? Why aren't I loved? What is wrong with me? Is life really meant to be like this at 32?

Cancer. 

Maybe it's all in my mind. Maybe I am living a self-fulfilling prophecy thinking these thoughts. Maybe I put people, men, off. 

I don't know. 

So I know this isn't a 'normal' mental health blog post. Normal. What is that anyway?! And I should know that at 32 and happy wearing gold shoes, a neon print cat jumper and a faux leopard print fur jacket that I am anything but normal. 

And you know what? I'm pretty fucking happy about that. 

I live constantly contradicting myself in my mind. Always arguing the other side. 

But today. I am 2 weeks chemo free as I have been given a break and I’m feeling like me again. I woke up naturally after 9 hours sleep.  I managed to go for a little run. I've had my breakfast, showered, got to my workspace and I don't feel completely fucked and out of energy. So this makes me happy. I vaguely remember life being like this. 

So today, in mental health awareness week I am doing what I can to educate about chronic cancer and the impact it has on mental health.

With love and hope,

XXX

Bone Marrow Transplant?

Well my lovely bloglets,

I’ve got a really big decision to make.  Well, at least I’m pretty sure I need to make the decision; that’s not already made.  There might be another option, going by recent history it won’t be better.  It was a bombshell that blindsided me a bit.  A lot.  Spent most of Monday in a bit of a daze.  So unexpected.  My gut reaction was ‘thank god and do it’, but then my brain kicked in.  It would mean taking a pause from life.  Just as my business is really beginning to pick up….  I would become a ‘normal’ cancer patient.  Is this what I want? 

I had my check up on Monday and was talking to my consultant about my fatigue and how debilitating it is.  I’m trying to get 11 hours sleep a night.  And I still feel fucked by lunchtime the next day.  It’s not meant to be like this.  Is it?  I don’t know.  What’s ‘normal’ tiredness?  I’ve lost touch with what is right and wrong.  I’ve felt like this for so long and it’s getting progressively worse.  And I don’t think that’s normal.

And then I think of other people who have chronic fatigue and chronic fatigue syndrome and they can’t get out of bed, so then I think, well I’m ok then.  I get out of bed.  I function. Well, just about.  I go to meetings and see clients.  I can look after myself.  I can cook and clean and tidy.  So maybe I think I’m worse than I am.  But then the way my head and body feels.  It can’t be normal.  I feel so heavy.  I feel like I’ve been punched in the face.  My head aches.  I fuel myself with caffeine and don’t stop eating.  I don’t really get anything done as I can’t focus.  I cry.  I eat eggs on toast as I don’t have the energy to cook.  Or go to the shop.  I have to sit all day.  And then I walk as fast as I can when I have to walk, so it’s over as quickly as possible.  I don’t really have a social life.  I managed to see a friend earlier in the week as we met near where I live so I could mentally deal with meeting up.

So on Monday when telling my consultant that I need around 11 hours sleep and she looked through my file and said to me.  Do you want a bone marrow transplant?

What.  The.  Fuck.  Fuck. This is big.  This is huge.  This is almost too much to deal with.  Shit. 

Do I?

The reason is because I am on pill chemo I get progressively worse. I get given a break and I feel good and then my leukaemic rate goes up so I have to go back on it and I’m ok. And I just get worse and worse and worse.  My quality of life is pretty fucking awful.  I either work or see friends.  I can’t do both.  I get into bed around 8pm.  This is not a sustainable way to live for the rest of my life.  I’m 32.  It’s not meant to be like this.

So do I want a bone marrow transplant?  I think I do.  A cure.  To be cancer free.  Something I never thought could happen.  No longer a cancer kid.  It’s been with me for 10 years.  Maybe it’s now time to say goodbye.  It would mean I don’t have to tell guys about it which puts them off.  It means I don’t have to get to a place where I am allowed a year off treatment to have a baby.  It means I’m not fucking exhausted all the time.  It means I’m not worried about how much sleep I will get that night and the impact it will have on me the next day.  It means.  Well.  It means I get my life back.

The bad side.  Well.  It could kill me.  Or rather an infection could when I have no immunity.  I need to find a donor who is a good enough match.  I could have all sorts of side effects from it.  Serious damage could be done to my body.  A life of pain.  And of course.  A life of post-transplant fatigue.  Do I want this?  No.

The transplant process is around a year.  I would be living in hospital for some of it.  I would have to pause my business for a while. It could be for a year, as in the beginning, I would probably be ok to carry on working.  Not when my hair falls out.  Not when I become ‘a cancer patient’ and certainly not when I’m living in hospital.  Will that damage it? Will all the work over the last 2 and a half years disappear?

And I feel a little bit like a failure.  With all my knowledge, why haven’t I been able to ‘fix’ myself?  Will people judge me?  Will they think, why should I see her?  Spend my money seeing her to help my health when she couldn’t help herself?

So, do I want a transplant?  I think I do.  It’s fucking terrifying. 

I asked my consultant if she would do it and she said yes.  This gives me confidence.  I trust her implicitly.  With my life.

I would be doing it as a ‘healthy’ person rather than an ‘ill’ one.  My body would be in a better place to go through it.  I have thought about the ‘what ifs’ of a bone transplant and if I had had one over the last 10 year.  Would my life be better?  Well now, I have the chance to find out.

I have one more pill chemo to try if I want to.  The problem is, I normally feel ok to begin with.  The fatigue is accumulative.  And if I do this, I want to start as soon as I can.

I’m on a 4 week chemo break at the moment so hopefully by this coming Monday I will feel better.  Back to normal.   And when I do, I will truly know if it’s the right thing to do. 

I can’t have the rest of my life like this.  It’s unbearable.

So do I want a bone marrow transplant?

I think I do.

I will need all my angels with me for this one.

XXX

Running on Empty

Running on empty 

This is not a new topic. I wonder if I will ever be able to not write about this. This invisible thing that follows me everywhere. Always there. Keeping me company. This thing that you can't explain or describe. That you smile at when friends and family say they know how you feel as they are tired too. This heaviness in my face and body. I feel like I've been punched in the eyes. Well. I think I do. I've never actually been punched....

Chronic fatigue. 14 letters. 14 letters that fuck my life. Stupid mistakes made because I used up all my energy in a one hour meeting and then spend the rest of the day emailing. And then having to re-email to apologise for things left out. Incorrect information given. Nothing huge. The wrong date here and there. Accidentally double booking myself. It's all fixable. It just takes time to do it. Time that further drains my energy. 

Running on empty. I feel like I have been like this I got back to London after Christmas. Actually. That's not quite true. I had a week of feeling ok. 

I saw a request for tips on how to deal with fatigue post treatment. I just smiled. 10 years in and I still don't know how to deal with it. How to truly cope and be able to function like I should be able to. 

I eat well. Really well. My diet is nearly all organic vegetables and fruit. I have basically the same breakfast everyday full of energy boosting, cancer killing foods. I take really good quality supplements. I go to bed early. I try to exercise.... I walk a fair amount. I don't drink. I don't smoke. And still. 

I feel fucked. 

This week I can't focus. I can't cope. I've been getting a solid 10 hours plus every night for weeks, other than the odd night here and there. I get through the day. Just. I'm trying really hard not to just rely on sugar to get me through the day. And in fact I've had very little this week. So I get up, do what I have to do during the day and then breathe a sigh of relief that I didn't make plans that night and I can go home and get into bed. 

I haven't seen any of my friends in at least 2 weeks. I don't have the energy to even arrange seeing them knowing that 9 times out of 10 I will have to cancel. I live on the other side of London to those that are still in London and I don't feel I can ask them over for eggs on toast. Because that's all I have the energy to cook. 

And on top of this a critically ill family member. I have said goodbye to them and was lucky that they were still here enough to know it was goodbye. But I'm worried, not about them but about those that will still be here. And I'm powerless to do anything about it all. 

I don't quite know what I'm saying or where this is going. 

I am on my way to my parents and my mother emailed me to say to have a bath when I get in as I don't have one in london. And you know what my first reaction was? I wanted to cry. To cry in the relief that I am going home. That I can have a bath. That food will appear. I don't have to look after myself. To clean. To tidy. To put clothes away. To not be an adult. And the only reason why I'm not crying is that I'm on a train. 

I'm 32 by the way. 

Time to end this post. I feel it's very inconclusive. I don't feel better like I normally do. I don't feel the weight lifted. I'm so fucking fed up of feeling tired, no, exhausted all the fucking time. And being that person whinging about it all the fucking time. I'm fed up of feeling angry at people who say they know how I feel when they don't. I'm fed up of having to mentally bully myself every single day into doing things. Like standing up. 

One day......

I hope. 

XxX